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Deciphering decipher

Jmr11820 profile image
7 Replies

Hello all. This is my first post. I was diagnosed in July with pT3a, 4+3 prostate cancer. PSA was 6.59. In June, MRI had revealed a solitary 7 mm PIRADS 4 lesion. RP in early October resulted in pathology of 4+3 (70% 4), EPE, PSM 1mm. Dr Epstein reviewed path and affirmed 4+3, but 80% 4 (tertiary 5)? Grade at margin however was 3+4. PSM was 3mm (1mm+ 1mm space+ 1 mm) for a 3 mm total. After surgery, PSA was .01 at both 1 month and 3 months post op appointments. At 1 month appointment urologist ordered DECIPHER test. Result was .83 high risk. After the 3 month PSA, doc seemed to take a more wait and see approach. My question concerns the DECIPHER GRID. My radiation response is 16, ADT 23, and Dosetaxel sensitivity 73. Confusing to me is that each number is within the average distribution range which is shown by a gray bar graph line. It’s a very broad range. Should I pursue ART, given the GRID? The folks at DECIPHER say the GRID shouldn’t be used for treatment decisions. My urologist, who has done over 1800 surgeries, seemed to have not even read the GRID until I pointed out my treatment response scores. I welcome your thoughts and insight. Thank you.

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jronne profile image
jronne

hey sorry for your bad luck, you certainly need to act, the question is how and when. it is time to move onto an oncologist as the surgeon's job is done which is why they are pretty clueless as to the exact path forward

Dr Epstein is the guy and is a saint. His take as definitive as it gets. sounds like you are using the rights tools and tests.

the decipher test is great in that it echoes the need to act given the 0.83 which agrees with your post RP measurable uPSA. the question of exactly how to act is always tough as there is never a clear cut path. many would do ADT followed by ART.

get at least two opinions along with the advice from the somewhat knowledgeable peanut gallery here (other online forums too, inspire, healingwell, no one is a doctor btw but many have seen alot along with their own journey).

everything is an art form from when to radiate, what to radiate, what margins to use, what type of ADT, how much ADT, etc ...

ask many questions and find doctors that will work with you and are proficient

Jmr11820 profile image
Jmr11820 in reply tojronne

Thanks for the response. Still wondering about the grid treatment prediction scores. That’s really left me scratching my head. You mentioned post RP measurable PSA...... .01 is technically undetectable, correct?

jronne profile image
jronne in reply toJmr11820

correct, technically undetectable at 0.012 but trending up for 2 years from < 0.006

I wonder if I get lucky and it plateaus or if just becomes detectable later

I wish I knew my odds to some degree

no certainty with anything in prostate cancer

my decipher score is a good 0.22 which might influence how I act with regards to SRT if needed

Tall_Allen profile image
Tall_Allen

You should not be talking to a urologist- his job is over. Talk to a radiation oncologist. A persistent PSA of 0.1 is certainly reason to have SRT (it's too late for ART).

Jmr11820 profile image
Jmr11820 in reply toTall_Allen

Thanks for the response. To be clear, PSA was .01 at 1 month and 3 month post surgery.... not 0.1. That still makes it ART, isnt that right? Rechecking in April. Allen, do you have any insight to the grid numbers treatment response numbers? Concern is that such a low radiation response score might mean radiation therapy is not effective. Again, maybe I shouldn’t put too much weight on the GRID numbers. Thanks again.

Tall_Allen profile image
Tall_Allen in reply toJmr11820

Thanks for clarifying that - I thought you wrote 0.1 - my bad. At 0.01 there is absolutely no reason for action.

pcnrv.blogspot.com/2019/09/...

I agree- GRID is experimental and unvalidated.

Jmr11820 profile image
Jmr11820 in reply toTall_Allen

The high DECIPHER score is kind of a Pandora’s box. Now that I have that result, it’s hard to ignore as it advocates radiation now, but the .01 PSA, although still early, makes it a tough call, radiation therapy with such a low number. My doc seems to agree with you, that is to stay the course and watch PSA quarterly. Thank you for the response...... very much.

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